Learning to live with chronic pain and illness gracefully

“I’ve Been Better”

I am slowly working on a pain dictionary, or maybe it’s a translation guide, for what I say and what I mean. I find myself playing down how I feel because I don’t want to make a big deal of things. Since it’s rare that I feel perfectly fine, I don’t want to sound like a whiner or an hypochondriac. This means that I haven’t really developed a descriptive language for my various states of being, which makes it even harder to explain things to folks who don’t share chronic pain experiences.

So here’s a rough draft to start:

“Just tired” – I feel like you do when you haven’t had a good night’s sleep. Sluggish but functional. Judicious application of caffeine helps awareness, if not functionality.

“Tired” – I feel as if I did not sleep at all last night, even if I actually slept 8 or 10 hours. My responses are slow, I’m clumsy, and if you allow me the least excuse I will go back to bed and stay there.

“Exhausted” – I feel as if I just ran a marathon, even if all I did was walk across the room.

“Fatigued” – I feel as if someone has turned up the gravity in my immediate location. I move every slowly and it is an effort to do everything. I am still fine-tuning the differences between tired, exhausted, and fatigued in my experience, but I do sometimes feel more than one, or all of them, at the same time.

“Stiff” – My joints feel like I did heavy work yesterday, whether I actually did or not. Usually things loosen up in an hour or two. I have trouble bending over and getting dressed. My joints pop. A lot. My fine motor skills also tend to be a bit hit-or-miss.

“Achy” – My joints have dull pain and are probably swollen. I have probably already taken OTC arthritis medication and it is only partially or not at all alleviating my discomfort. Cold or humidity usually makes this worse. I probably cannot pop my joints if I try. I am likely to have back twinges or spasms if I push too hard.

“In pain” – I hurt as if I have a physical injury, usually in paired joints at the same time. Unfortunately, depending on how functional I need to be determines what I can and cannot take. I occasionally react strongly to my muscle relaxant, so I can only take it when I do not need to drive or do anything complex. Unfortunately, it does not always work. I take Prednisone when I am in pain and need to function and it works consistently and well, but I try to minimize how often I take it due to side effects.

“Not bad” – usually means “Surprisingly good”. I am feeling all right, despite probably some “just tired” or stiffness. More functional than I expected under the circumstances. This is also usually what I consider to be a “good day”- when how I feel does not keep me from doing things I want/need to do and my mood is good. I could use a few more days like this.

“Okay” – I can function but it’s probably not fun. I am most likely just tired, tired, stiff, achy, or some combination thereof.

“I’ve been better” – I am hurting somewhat. Most likely tired, stiff, and achy, but trying to stay cheerful about it and shouldering through.

“Great!” – I am free of pain and feel rested. It has been a long, long time since I felt great.

Of course, all this becomes more complicated because I can cycle through several states of being in a given day. I can be okay in the morning and then degenerate in the afternoon. This morning was pretty awful but I have improved somewhat, hence the title of this post. I never know which way things are going to go, however. After talking things over with hubby I am taking as easy a day at work as I can and we’ll just do some house-shopping instead of caulking and unpacking after work today. Hopefully a hot shower and early to bed will allow me enough spoons to get through a rough work day tomorrow. Variability makes it hard to plan, however, and of course I worry and stress about it, which does me no favours.